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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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SevereCD02

In desperate need of help / gluten free SSRI (Cymbalta/Paxil)

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So, where to begin... I was officially diagnosed with Celiac Disease about 2.5 years ago and have been trying to fully heal since then. I knew prior that I had celiac disease but didn't know how serious being gluten free needed to be if you have it. My intestines got so damaged that I had no energy (needed about 12 hours of sleep a day when I normally would sleep 8) and could barely function. I ended up having to quit my job because of how much time I had missed (had used all FMLA, vacation, etc) and spent about 5-6 months recovering till I had enough energy to work a 32 hour/week job but even then was calling out because of gluten exposure.

The biggest problem for me has been Rx medication. Food has been hardly an issue at all, at least in comparison. I currently take 2 types of prescriptions and have had problems with both over the past 2.5 years; Hypothyroid medication (T3/T4) & SSRI for depression/energy. I used to go between Paxil and Cymbalta. I would be on one for about 9 months, switch to the other, and repeat (because of the immune system's "short term memory"). I've had a lot of trouble with generic brands and more recently have been using only name brands because they are the only ones now that are listed as Gluten Free on glutenfreedrugs.com, but, now I seem to be having problems with them as well.

My doctor has told me that I'm very sensitive to gluten (I think she said I've ranged from an 8-12?). I'm not sure what scale she was referring to, but I know I'm very sensitive based on how my body's reacted to the smallest amount of gluten. When I ingest gluten, my body seems to react by my gallbladder producing a lot more bile (this is most noticeable about 8 hours after I consume gluten), which causes me to have severe diarrhea for about a week (it's basically all liquid). I take my Rx medications everyday, so it's non-stop diarrhea, which makes it hard to stay hydrated. The more water I drink, the more I just end up ****ing it out. I've been taking Benadryl at night because I heard it can help with upset stomach for people with celiac disease. Before I started taking the Benadryl at night I was waking up after about 6 hours of sleeping with extreme stomach pain (too much bile in my stomach?) and having to rush to the bathroom, and would be in there for about an hour.

I'm very in tune to knowing when I'm getting gluten exposure for 2 reasons: 1) the slightest amount will cause my stool to get softer and I can smell a difference when I go to the bathroom (my guess is it's from the bile, which has a strong odor), and 2) the amount of long acting insulin required for me per day is less depending on how damaged my small intestines are (I have type 1 Diabetes).

I started taking Cymbalta 60 mg about 2 weeks ago and notice severe gluten exposure. I was on it for about 5 days and stopped taking it for a day to see if the symptoms lessened and I couldn't see a difference from only a day. I tried to stop taking it for 2 days but the withdrawl symptoms were too severe (intense sadness/hopelessness, strong suicidal thoughts, etc) and I don't even remember if the gluten exposure symptoms lessened because I could barely function mentally. I'm pretty sure that's where the gluten is coming from because it was the biggest change at the time. I had actually switched from a generic Cymbalta (duloxetine by Mylan) slightly early from my 9 month usual switch because I was having gluten symptoms (at the time, glutenfreedrugs.com listed it on their list but soon changed it to "now questionable").

I'm currently trying Zoloft (been on it for about 3 days now) and the gluten symptoms seem to be slightly less but I won't know for at least another few days. Plus, I don't know if it's actually going to work for me (depression wise). I was going between Paxil & Cymbalta for about 15 years and they were working for me very well (as far as depression) up until recently (because of gluten). I know I've tried Celexa, Lexipro, & Wellbutrin in the past and cannot take them because they either make things worse or the negative side effects outweigh the benefits. I may have tried another type or two of SSRI but it's been so long that I can't remember for sure.

I'm making this post to try and get some advice, or even just words of encouragement, on any generic Rx versions of Cymbalta (and Paxil as well, but I won't be taking it for a while so it's less relevant at this point) that people have recently had success with. I've searched online & this site but haven't been able to find anything recent about these medications (most of the posts I've found are from many years ago). I'm scared. Scared of all the times I want to kill myself in any given day because of not taking an SSRI to try and reduce the gluten exposure. Scared that things will get as bad as they've gotten before and I will have to quit my job again. Scared to cry because I'll become even more dehydrated and may not be able to keep fluid in me because of my body is currently not being able to absorb water the way I need it to. The past 3 years have been really tough and I don't really know where to turn at this point. Sorry if this post isn't the most organised. I'm currently an emotional wreck while typing this and at least trying to get out all the important info.

Here is a list of new things I've been eating in case someone reads this and sees something they've had problems with that might (also?) be causing gluten issues:
Schär Gluten Free Artisan Baker Multigrain Bread (to try and soak up some of the bile, but with constant gluten exposure this doesn't help much)
Ensure Original Nutrition Shake (says Gluten Free on it)
Pedialyte Advanced Care+
Benadryl

Edited by SevereCD02
adding to recent food changes

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21 minutes ago, SevereCD02 said:

So, where to begin... I was officially diagnosed with Celiac Disease about 2.5 years ago and have been trying to fully heal since then. I knew prior that I had celiac disease but didn't know how serious being gluten free needed to be if you have it. My intestines got so damaged that I had no energy (needed about 12 hours of sleep a day when I normally would sleep 8) and could barely function. I ended up having to quit my job because of how much time I had missed (had used all FMLA, vacation, etc) and spent about 5-6 months recovering till I had enough energy to work a 32 hour/week job but even then was calling out because of gluten exposure.

The biggest problem for me has been Rx medication. Food has been hardly an issue at all, at least in comparison. I currently take 2 types of prescriptions and have had problems with both over the past 2.5 years; Hypothyroid medication (T3/T4) & SSRI for depression/energy. I used to go between Paxil and Cymbalta. I would be on one for about 9 months, switch to the other, and repeat (because of the immune system's "short term memory"). I've had a lot of trouble with generic brands and more recently have been using only name brands because they are the only ones now that are listed as Gluten Free on glutenfreedrugs.com, but, now I seem to be having problems with them as well.

My doctor has told me that I'm very sensitive to gluten (I think she said I've ranged from an 8-12?). I'm not sure what scale she was referring to, but I know I'm very sensitive based on how my body's reacted to the smallest amount of gluten. When I ingest gluten, my body seems to react by my gallbladder producing a lot more bile (this is most noticeable about 8 hours after I consume gluten), which causes me to have severe diarrhea for about a week (it's basically all liquid). I take my Rx medications everyday, so it's non-stop diarrhea, which makes it hard to stay hydrated. The more water I drink, the more I just end up ****ing it out. I've been taking Benadryl at night because I heard it can help with upset stomach for people with celiac disease. Before I started taking the Benadryl at night I was waking up after about 6 hours of sleeping with extreme stomach pain (too much bile in my stomach?) and having to rush to the bathroom, and would be in there for about an hour.

I'm very in tune to knowing when I'm getting gluten exposure for 2 reasons: 1) the slightest amount will cause my stool to get softer and I can smell a difference when I go to the bathroom (my guess is it's from the bile, which has a strong odor), and 2) the amount of long acting insulin required for me per day is less depending on how damaged my small intestines are (I have type 1 Diabetes).

I started taking Cymbalta 60 mg about 2 weeks ago and notice severe gluten exposure. I was on it for about 5 days and stopped taking it for a day to see if the symptoms lessened and I couldn't see a difference from only a day. I tried to stop taking it for 2 days but the withdrawl symptoms were too severe (intense sadness/hopelessness, strong suicidal thoughts, etc) and I don't even remember if the gluten exposure symptoms lessened because I could barely function mentally. I'm pretty sure that's where the gluten is coming from because it was the biggest change at the time. I had actually switched from a generic Cymbalta (duloxetine by Mylan) slightly early from my 9 month usual switch because I was having gluten symptoms (at the time, glutenfreedrugs.com listed it on their list but soon changed it to "now questionable").

I'm currently trying Zoloft (been on it for about 3 days now) and the gluten symptoms seem to be slightly less but I won't know for at least another few days. Plus, I don't know if it's actually going to work for me (depression wise). I was going between Paxil & Cymbalta for about 15 years and they were working for me very well (as far as depression) up until recently (because of gluten). I know I've tried Celexa, Lexipro, & Wellbutrin in the past and cannot take them because they either make things worse or the negative side effects outweigh the benefits. I may have tried another type or two of SSRI but it's been so long that I can't remember for sure.

I'm making this post to try and get some advice, or even just words of encouragement, on any generic Rx versions of Cymbalta (and Paxil as well, but I won't be taking it for a while so it's less relevant at this point) that people have recently had success with. I've searched online & this site but haven't been able to find anything recent about these medications (most of the posts I've found are from many years ago). I'm scared. Scared of all the times I want to kill myself in any given day because of not taking an SSRI to try and reduce the gluten exposure. Scared that things will get as bad as they've gotten before and I will have to quit my job again. Scared to cry because I'll become even more dehydrated and may not be able to keep fluid in me because of my body is currently not being able to absorb water the way I need it to. The past 3 years have been really tough and I don't really know where to turn at this point. Sorry if this post isn't the most organised. I'm currently an emotional wreck while typing this and at least trying to get out all the important info.

Here is a list of new things I've been eating in case someone reads this and sees something they've had problems with that might (also?) be causing gluten issues:
Schär Gluten Free Artisan Baker Multigrain Bread (to try and soak up some of the bile, but with constant gluten exposure this doesn't help much)
Ensure Original Nutrition Shake (says Gluten Free on it)
Benadryl

I am so sorry that you are suffering!  

Have you had repeated celiac antibodies testing since your diagnosis?  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Depression and anxiety can be attributed do to celiac disease if it is active.  It can at least compound  your issues with depression.  What about your thyroid?  Do you have autoimmune thyroiditis (Hashimoto's or Graves)?  Are those antibodies elevated?  

Sometimes the fillers in Prescription drugs can cause symptoms.  It may not be related to gluten but other fillers like corn.   Consider a food/symptom journal to help indentify intolerances.  

Consider the Fasano diet if your find that your antibodies are elevated.  It basically emlimnates all processed foods.  For example, I can not eat Xanthan Gum.  It makes me sick.  So, I can not buy commercial gluten-free breads.  My hubby can eat them, but for some weird reason, I can not despite being gluten-free for for years).  

http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/

So glad that you found us!  I am sure others will soon come to your aid!  

 

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Thank you for the info cyclinglady! As far as repeated celiac antibodies testing, I think my dr had me tested for that several months ago, and it was improving. I think that's when she had mentioned that "you're an 8 now and you used to be a 12". That was about 3-4 months ago if I recall. As far as my thyroid, I don't ever remember my dr mentioning anything like Hashimoto or Graves, just that my T3 levels were off. When I went to the dr recently (4 days ago), she had mentioned that I HAVE to take a synthetic or natural Rx for it (like Nature Throid) and said I basically can't just stop taking it, and if I stopped taking it that, worst case, I could end up dying. 

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I am on Armour Thyroid hormone replacement and it is gluten free (20 years).  I believe Gemini is on Nature thyroid and it is gluten free too.  I have never tried the synthetic drugs as my doctors have always like Armour's results.  Use the search box in the forum to determine which synthetic drugs are gluten free.  

Thyroid replacement, although considered a prescription drug, is just that a replacement.  You need it to survive.  So, do not think of it as taking a drug.  

I would ask for an antibodies test for your thyroid to confirm if it is autoimmune or not.  

Congratulations on your reduced antibodies.  Remember, that they can rise again when exposed to gluten.  I would suggest that you get and keep all copies of your lab tests.  It really helps to have your medical records on hand.  Very handy for second opinions or when changing doctors.  

 

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I'm sorry I don't have much advice for you but I can relate in some ways. I've took generic Zoloft for about 10 years. When I was diagnosed celiac I worried about and researched my medications and am confident that they are safe for me. I have spent many years fighting depression and anxiety and have tried different meds but finally accepted I need the Zoloft and Xanax probably for life. I will say that most of our serotonin is in our stomachs and any time I switched meds or had to withdrawal my stomach issues were the worst. So please be careful with switching or stopping ( never cold turkey) any psychiatric medication. Also you could be sensitive to other grains. Gluten free bread does not like me. Also so far I have not found any one in the medical field that takes celiac seriously. I have been laughed at even and most don't have a clue what problems gluten does to us mentally and physically.

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@cyclinglady I heard that there were problems with Armour Thyroid when it came to gluten a few years ago. I thought it was no longer safe?

@Megamaniac I had forgot to put that in my original post that I have a lot of issues with anxiety as well. I've never actually been officially diagnosed with a type of depression/anxiety/etc, but I've had problems with that ever since I was pretty young (I think before puberty). I'm sorry to hear about your medical field experience. I've actively sought out doctors (and got lucky having a great primary dr) over the past few years since very few seem to know much about it. The fact that a doctor would laugh at a patient for anything is pretty infuriating. Sorry to hear that. I went to a gastro that barely listened to a word I was saying and only offered a short term "solution" so I never went back to him.

Edited by SevereCD02

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No, Armour has always been gluten free.  The formulation changed a few years back and during the switch, there was a shortage.  That has long since resolved.  Forest Pharmaceuticals (manufacturer of Armour) was bought out by Activas in 2015.  They increased the price!  Now it is comparable to synthetic.  

Imtried to find a good and reputable source about the history of thyroid replacement.  Here is one link -- the story is pretty accurate, but the site is trying to sell you stuff.  

https://thyroidpharmacist.com/articles/the-history-of-natural-desiccated-thyroid-medications/

 

Edited by cyclinglady

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Oh, here is the gluten free drug list.  It is not complete.  It is developed by a pharmacist who advocates for celiacs or NCGIs.    I check this list, talk to my own pharmacist and call the manufacturer.  A hassle, but worth doing.  There might be a few other lists, but hopefully others will chime in.  

http://www.glutenfreedrugs.com/newlist.htm

Pill box box can be helpful.

https://pillbox.nlm.nih.gov/pillimage/search.php

Keep in mind that there are binding ingredients other than gluten that can affect you (e.g. Corn), but that all depends on the individual.  Compounding is another possibility.  

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I've been researching Compounding and seems hopeful, but the pharmacies I've called so far (only 2) made it sound like there's nothing for duloxetine (Cymbalta) that's gauranteed gluten free. I figured they would actually take each active ingredient and make the medicine, but the pharmacists I talked to made it sound like all they would be doing is breaking up an already made up duloxetine tablet or capsule... Still have a lot of research to do on it but ty for mentioning it @cyclinglady I had no idea that was even a thing.

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This drug used to be on the Glutenfreedrugs.com list.  The previous link I gave you was just a partial from 2017 and the pharmacist is still in the process of updating it.  Here is the old list that could be outdated. Call the manufacturer.  As long as there is no gluten in the ingredients, you should be safe.  Drug companies have strict standards for cross contamination.  They will not guarantee that it is gluten free, but that is what their attorneys want them to say.  

http://www.glutenfreedrugs.com/Glutenlist.htm

or...ask your doctor for another drug to try.  

I do not know you.  I am not a doctor.  Consider the strict Dr. Fasano  gluten-free diet for a few months to see of your depression lifts.  Gluten might be sneaking into your diet.    Depression can be related to celiac disease and can be hard to resolve if gluten is sneaking into your diet.  See if you new thyroid medication helps.

 Talk to your doctor before you go off any medication!!!!

Again, consider the Fasano diet.  It is just fruit, veggies, meats, rice, etc.  nothing processed, even gluten-free processed.   The side effects?  NONE!  

Edited by cyclinglady

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Dear Severe,

I just want to add that depression can require medication. I did not mean to discount your need for it.    It can really help.  I am sad that your doctor is not helping you to insure and reassure you that all your medications are gluten free.  You should not  (no one should) have to do this kind of research when you are feeling sick. 

I have been in your shoes trying to obtain a gluten free antibiotic.  I chose one from the old GFdrugs.com list (my dentist wrote the prescription) and had to go to five pharmacies to find it.  Oh, they could order it, but I needed it that day!  I ended  up calling the manufacturer to be extra safe,    Not easy to do when you are not functioning at 100%.  

I know other members are on anti-depressants.  I hope they can contribute.  In the meantime, I will query the forum.  

 

Edited by cyclinglady

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On 9/24/2017 at 12:30 PM, SevereCD02 said:

So, where to begin... I was officially diagnosed with Celiac Disease about 2.5 years ago and have been trying to fully heal since then. I knew prior that I had celiac disease but didn't know how serious being gluten free needed to be if you have it. My intestines got so damaged that I had no energy (needed about 12 hours of sleep a day when I normally would sleep 8) and could barely function. I ended up having to quit my job because of how much time I had missed (had used all FMLA, vacation, etc) and spent about 5-6 months recovering till I had enough energy to work a 32 hour/week job but even then was calling out because of gluten exposure.

The biggest problem for me has been Rx medication. Food has been hardly an issue at all, at least in comparison. I currently take 2 types of prescriptions and have had problems with both over the past 2.5 years; Hypothyroid medication (T3/T4) & SSRI for depression/energy. I used to go between Paxil and Cymbalta. I would be on one for about 9 months, switch to the other, and repeat (because of the immune system's "short term memory"). I've had a lot of trouble with generic brands and more recently have been using only name brands because they are the only ones now that are listed as Gluten Free on glutenfreedrugs.com, but, now I seem to be having problems with them as well.

My doctor has told me that I'm very sensitive to gluten (I think she said I've ranged from an 8-12?). I'm not sure what scale she was referring to, but I know I'm very sensitive based on how my body's reacted to the smallest amount of gluten. When I ingest gluten, my body seems to react by my gallbladder producing a lot more bile (this is most noticeable about 8 hours after I consume gluten), which causes me to have severe diarrhea for about a week (it's basically all liquid). I take my Rx medications everyday, so it's non-stop diarrhea, which makes it hard to stay hydrated. The more water I drink, the more I just end up ****ing it out. I've been taking Benadryl at night because I heard it can help with upset stomach for people with celiac disease. Before I started taking the Benadryl at night I was waking up after about 6 hours of sleeping with extreme stomach pain (too much bile in my stomach?) and having to rush to the bathroom, and would be in there for about an hour.

I'm very in tune to knowing when I'm getting gluten exposure for 2 reasons: 1) the slightest amount will cause my stool to get softer and I can smell a difference when I go to the bathroom (my guess is it's from the bile, which has a strong odor), and 2) the amount of long acting insulin required for me per day is less depending on how damaged my small intestines are (I have type 1 Diabetes).

I started taking Cymbalta 60 mg about 2 weeks ago and notice severe gluten exposure. I was on it for about 5 days and stopped taking it for a day to see if the symptoms lessened and I couldn't see a difference from only a day. I tried to stop taking it for 2 days but the withdrawl symptoms were too severe (intense sadness/hopelessness, strong suicidal thoughts, etc) and I don't even remember if the gluten exposure symptoms lessened because I could barely function mentally. I'm pretty sure that's where the gluten is coming from because it was the biggest change at the time. I had actually switched from a generic Cymbalta (duloxetine by Mylan) slightly early from my 9 month usual switch because I was having gluten symptoms (at the time, glutenfreedrugs.com listed it on their list but soon changed it to "now questionable").

I'm currently trying Zoloft (been on it for about 3 days now) and the gluten symptoms seem to be slightly less but I won't know for at least another few days. Plus, I don't know if it's actually going to work for me (depression wise). I was going between Paxil & Cymbalta for about 15 years and they were working for me very well (as far as depression) up until recently (because of gluten). I know I've tried Celexa, Lexipro, & Wellbutrin in the past and cannot take them because they either make things worse or the negative side effects outweigh the benefits. I may have tried another type or two of SSRI but it's been so long that I can't remember for sure.

I'm making this post to try and get some advice, or even just words of encouragement, on any generic Rx versions of Cymbalta (and Paxil as well, but I won't be taking it for a while so it's less relevant at this point) that people have recently had success with. I've searched online & this site but haven't been able to find anything recent about these medications (most of the posts I've found are from many years ago). I'm scared. Scared of all the times I want to kill myself in any given day because of not taking an SSRI to try and reduce the gluten exposure. Scared that things will get as bad as they've gotten before and I will have to quit my job again. Scared to cry because I'll become even more dehydrated and may not be able to keep fluid in me because of my body is currently not being able to absorb water the way I need it to. The past 3 years have been really tough and I don't really know where to turn at this point. Sorry if this post isn't the most organised. I'm currently an emotional wreck while typing this and at least trying to get out all the important info.

Here is a list of new things I've been eating in case someone reads this and sees something they've had problems with that might (also?) be causing gluten issues:
Schär Gluten Free Artisan Baker Multigrain Bread (to try and soak up some of the bile, but with constant gluten exposure this doesn't help much)
Ensure Original Nutrition Shake (says Gluten Free on it)
Pedialyte Advanced Care+
Benadryl

Severe,  I'm truly sad to hear of your problems.  I had an awfully horrible really bad time taking antidepressants.  I tried all those you mentioned plus some.  I had the copious watery diarrhea all day and during the night, too.  I lost my job because of my illness.  I couldn't function, couldn't cope, was in a really horrible scary bad place mentally.  So I know how worried you are.  

Some medications are associated with damage to the intestines in Celiacs.  Scientists looked at a group of Celiacs and found those with damage were also the ones taking SSRIs, PPIs, and NSAIDs. More study has to be done, but there is an association. Here's the study.

https://www.ncbi.nlm.nih.gov/pubmed/28220520

 

Cymbalta is a drug that contains sulfur.  Many medications contain sulfur compounds or sulfur-based preservatives.  Some Celiacs develop a Sulfite Hypersensitivity.

http://www.thepatientceliac.com/tag/celiac-disease-and-sulfite-intolerance/

 

At one point, I was taking an SSRI, a PPI, and an NSAID.  The SSRI and the PPI both contained sulfites.  Plus I was on other medications for high blood pressure and type two diabetes, all of which contained Sulfites.  I have this sulfite hypersensitivity.  I got very ill.  So ill, I developed nutritional deficiencies.  I had pellagra.  It was very scary.

Prolonged severe diarrhea like you described, and I had, results in malnutrition because vitamins and minerals are not being absorbed properly and so the body can't work properly.

There are fat soluble vitamins, A, D, E and K.   A low level of vitamin D is linked to depression, hypothyroidism, and a whole list...

https://www.bewell.com/blog/symptoms-diseases-associated-with-vitamin-d-deficiency/

There are water soluble vitamins, the eight B vitamins and vitamin C.  These need to be replenished every day because they can't be stored in the body very long.  Thiamine (B1), Niacin (B3) and Cobalamine (B12) deficiencies all can cause anxiety, depression, and mental changes like dementia.  

https://www.ncbi.nlm.nih.gov/pubmed/19154566

Minerals are important, too.  Low Calcium and low Zinc can also affect brain function, as can low Omega 3's.

Your vitamin and mineral levels should be checked so that any nutritional deficiencies can be corrected.   Many doctors don't recognize deficiency diseases because they've never seen them, and they've been trained to pass out pills.   

Also discuss with your doctor about switching to a MAOI antidepressant.  MAOI antidepressants tend to work better with Celiacs.  

https://www.ncbi.nlm.nih.gov/pubmed/7134841

Try to cut out all processed foods, at least for a while.  And all grains, legumes and nightshades.  And dairy and eggs.  I followed the Autoimmune Paleo diet which helped so much.   Processed foods, gluten free or not, often contains sulfite bleaching agents and microbial additives (like xantham gum) that cause gut permeability.  

I can't emphasize enough how important it is to address nutritional deficiencies.  Celiac Disease causes malabsorption which results in malnutrition.  Until your intestines are healed, supplementation may be necessary.  I went through an awfully horrible terribly bad time when I had pellagra and I don't want anyone else to go through anything similar that could be so easily fixed with vitamins.  Please check your vitamin levels.

Hope this helps.

Kitty

 

 

 

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There are some natural things to help with stress, I have a corn allergy, and had to drop many of my RX years ago for this reason.

I swear by my supplement regime, and my food regime. I suggest them to anyone as they have pretty much saved, yes I practically worship that bottle of B-vitamins and magnesium and that reassurance and bliss I feel from taking them in combination with my diet. I eat a very high fat diet, and I eat foods that help promote well being and satsifcation by helping the body with saratonin and melatonin. Here is the list

Liquid Health Stress & Energy and Liquid Health  Neurological Support 1 tbsp each 3 times a day

Magnesium wise I would suggest Natural Vitality normally but since you have constant D I would say avoid it as it would irriate your gut too much. Try Doctors Best Magnesium in the powdered form, this way you can measure out your dose for what you need in a drink.

Food wise I swear by cocoa nibs, pumpkin seed protein. I would say hemp but right now there is a huge contamination issue in the industry with it.

As knitty mentioned you might want to cut out some foods many of us have issues with number one offender being dairy. Next avoid any oats period for now. You might drop all grains and nightshades and change to a whole foods only diet. I might suggest baked or boiled sweet potato for your carbs if you eat them, and soft cooked veggies and stews with a bone broth base.

Keep a food diary record everything you eat, and eat a rotating diet removing foods for a couple of days, this includes staples.

One other thought, you might consider you have developed another AI disease or issue. Perhaps a new food intolerance to a staple like corn or a seasoning. I developed Ulcerative Colitis and just got it Dia earlier this year. It is triggered by carbs, and sugars so I had to drop all carbs, sugars etc. and got to a ketogenic diet of nothing but fat and protein. Sounds annoying but I run a bakery and work as a baker so I make my own grain free baked goods, almond butters, etc to eat. For awhile I bought Julian Bakery low carb bread but recently developed my own for my bakery (1g net carbs a slice) Works great and regulated my system, more energy, no sugar issues, and feeling great.

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5 hours ago, SevereCD02 said:

Thank you for the info @knitty kitty. Were the sulfers in the SSRI/PPI/NSAIDs also damaging your small intestines or just causing symptoms?

I believe the Sulfites were doing damage.  I've been prescribed drugs containing sulfites since then despite my telling the doctors about the sulfite sensitivity and had all the gastrointestinal symptoms return with a vengeance plus some.  Sulfites cause more than only gastrointestinal problems with me.  My brain doesn't work right, my skin breaks out in boils, my eyes go wonky and I can't focus, my lungs get congested.  It's my whole body reacting.  Takes months to recover.  The more I'm exposed, it seems my reactions are worse.

My heart goes out to you.  I remember what it was like desperately searching for answers when I could barely function.  

Check with your doctor about adding vitamin supplements. Have you been tested for diabetes recently?  Sometimes low blood sugar can cause problems.  Keep a food diary.  Be cautious with processed foods.  Try a ketogenic diet like the AIP, like Ennis suggested.  You have lots of support here on the forum.  Hugs

 

 

 

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4 hours ago, knitty kitty said:

I believe the Sulfites were doing damage.  I've been prescribed drugs containing sulfites since then despite my telling the doctors about the sulfite sensitivity and had all the gastrointestinal symptoms return with a vengeance plus some.  Sulfites cause more than only gastrointestinal problems with me.  My brain doesn't work right, my skin breaks out in boils, my eyes go wonky and I can't focus, my lungs get congested.  It's my whole body reacting.  Takes months to recover.  The more I'm exposed, it seems my reactions are worse.

 

 

 

Do tell your pharmacist to add that info to your file and remind them when you get scripts filled. Just as doctors won't know for sure if a med is gluten free they won't know about whether they contain sulfites either.  If the med isn't safe for you the pharmacist can call the doctor for an alternative that is safe.

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15 hours ago, SevereCD02 said:

Thank you for the info @knitty kitty. Were the sulfers in the SSRI/PPI/NSAIDs also damaging your small intestines or just causing symptoms?

Hi Severe-

I have 2 thoughts-

One is that there are other formulations of SSRI/MAOI. Emsam is a MAOI. It is a class of drug that sounds like you haven't tried before. It is administered through a patch on the skin so no gluten exposure at all! I have a friend who tried a variety of SSRIs over her life and finally found a great response in Emsam to her depression.  MAOI are a little tricky because there are some pretty strict dietary restrictions when using them (i.e. no cheese) but if it works, maybe it's worth it. It was for her.

Also, Prozac comes in a liquid form. It says that it is gluten free.  

Finally, 70-80% of our serotonin receptors are found in our GI tract.  A very common side effect of SSRIs is diarrhea, especially when starting and stopping them. Usually there is a 2 week period when starting and stopping where diarrhea is very common and even then some people have it for longer - just taking their regular dose. Your diarrhea could just be a side effect of the medication and not being glutened at all.  As we age, we become more sensitive to the side effects of medications so just because you didn't have diarrhea before doesn't mean the SSRIs are not the cause now.

Good luck!

 

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@TexasJen I've been taking Cymbalta/Paxil for many years and never had a problem with diarrhea (until recently because of Celiac's). I know it's not just a side effect from switching because I'm now requiring less insulin, as well as the distinct smell like I had mentioned before. I'm also not getting as much energy as I normally would from the food I would normally eat. I looked up the Emsam but dismissed it because of how expensive it is but I'll ask my Dr about the MAOIs next week. @knitty kitty I've had type 1 diabetes for the past 28 years (since I was 7). Sorry if I'm not responding directly to everyone but know that I'm reading all your responses and taking everything into consideration. I've been doing hours of research every day and I'm exhausted. I slept 10 hours last night. 

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Severe,  I guess I should have phrased my question better.  Whenever I had a bad bout of depression or anxiety, I tested my glucose level at that time.  Sometimes it was too high or too low.  Either I didn't have enough glucose in my system so none was available for my brain cells (low blood sugar) or I didn't have enough insulin to get the glucose into the brain cells so the brain cells still didn't have any glucose for fuel (high blood sugar spikes like after a meal or exercise).  Either way, it caused an alteration in brain function.  I was wondering if perhaps something similar was happening with you.  Switching to the ketogenic AIP diet really helped me keep my blood glucose levels regulated. 

I've had my gallbladder removed, so fatty, greasy meals can be a problem (because gallbladders produce bile which aids in fat digestion).  I notice that "distinct smell" if I've had a meal that was too fatty.  Not that I mean to make you worry about something else, but it is something to make note of in your food diary. Perhaps avoiding really greasy foods might help.  (Ha ha, I have input/output columns in my food journal.)  

Do you have a problem with corn?  Some medications use corn starch as a filler.  Corn can trigger a gluten like reaction in some Celiacs (like me).  

I'm hoping you feel better soon.

 

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I tend not to eat greasy food and avoid it when my stomach is having issues. I test my blood sugar often and haven't had direct emotional changes from high or low, just physical, ie shaky/weak, lose train of thought (when low) and tired when high. I don't think I have a problem with corn. I've never noticed side effects from eating any type of corn (corn chips, corn on the cob, popcorn, etc).

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8 minutes ago, SevereCD02 said:

I tend not to eat greasy food and avoid it when my stomach is having issues. I test my blood sugar often and haven't had direct emotional changes from high or low, just physical, ie shaky/weak, lose train of thought (when low) and tired when high. I don't think I have a problem with corn. I've never noticed side effects from eating any type of corn (corn chips, corn on the cob, popcorn, etc).

Funny thing about having issues with a food, you do not notice immediate effects if you eat it daily, every other day, in some random form, or if it is a staple. YOU HAVE to 100% remove it from you life for at least 5 days to 2 weeks then try introducing it again. Corn is a complete utter pain to remove in today's society, it is in just about every other medication and in every prepared or processed food. I should know I have a major allergy to it.

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1 hour ago, SevereCD02 said:

 

Ennis is right about removing suspected problem foods for a time then reintroducing them later and watching for any reactions.  

Severe, I hope this doesn't worry you further.  I've been doing some research and it appears that Cymbalta MAY cause liver damage in SOME people.  It might be worth mentioning to your doctor and getting your liver, gallbladder and pancreas checked.  These studies say it's a rare occurrence, but it does happen.  Better safe than sorry.  I can not remember what antidepressant I was on when I had my gallbladder removed...I wonder....

 

https://www.ncbi.nlm.nih.gov/pubmed/20815829

https://www.ncbi.nlm.nih.gov/pubmed/26467777

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I did have my gallbladder checked less than a year ago and it was fine. I removed a lot of corn from my diet a long time ago because I know the body has a hard time really breaking it down. I haven't been strict with it, though, so I'm sure it's still in my system from medicine or other food. My diet has fluctuated a lot in the past few years due to health reasons (celiac, high cholesterol levels). My body also has a hard time processing vasoactive amines, which is in a lot of food. I can eat foods with the naturally occurring chemical in them but I try to avoid it if possible (can cause flem build up, headache, among other things).

Just an FYI, I stopped taking the Zoloft because I was having intense suicidal thoughts. For now, I'm back on Paxil, at least until I can figure out what else I can take. Something in the Cymbalta and Zoloft were causing the same problems for me as far as diarrhea & a lot of bile being produced. Since I went back on the Paxil (it's been 2 days) the diarrhea has calmed down a lot, and, starting today, I'm able to keep down fluids fairly well.

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Whew, glad your gallbladder is fine!  And glad you've switched meds and are feeling better.

My low histamine diet seems very similar to your low vasoactive amines diet.  

https://www.mthfrsupport.com.au/dao-deficiency-and-histamine-the-unlikely-connection/

I thought this article about histamine intolerance was very interesting and helpful.  Histamine production is sometimes triggered by certain drugs like Cymbalta and Zoloft.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248201/#!po=11.3333

And one more about nutrition.

I'm so glad you're feeling better.  

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I didn't even get to the end of your post yet because I was struck by your saying you took Benadryl. Benadryl contains gluten! I found out after I had taken some (generic store version) for an allergic reaction to toothpaste. After I got worse, I checked on the store brand and found it contained gluten, so I went to buy some name brand Benadryl and called their customer information number from the store because nothing on the packaging or the ingredient list indicated gluten. But the woman I spoke to said none of the Benadryl products--tablets, capsules, etc.-- were gluten free. I asked her why would a product that people take to lessen an allergic reaction contain a known allergen? She said they do not claim to be for that use. 

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    Jefferson Adams
    Celiac.com 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
    Just a few years ago, Dickson dominated her peers nationally and won a gold medal at Canada Games for both pursuit and team relay. She also won silver in the sprint and bronze in the individual race. But just as she was set to reach her peak, Dickson found herself in an agonizing battle. She was suffering a mysterious loss of strength and endurance, which itself caused huge anxiety for Dickson. As a result of these physical and mental pressures, Dickson slipped from her perch as one of Canada's most promising young biathletes.
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    Jefferson Adams
    Celiac.com 04/25/2018 - A team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. The research could be helpful for treating type 1 diabetes, lupus, and celiac disease.
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    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
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    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
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    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

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    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
    • Welcome!   With a sister who has celiac disease, you are at a much higher risk of developing it.  I would go for the complete 12 weeks.  Why?  Because doctors recommend anywhere from six to 12 weeks for the blood tests, but there has not been many long term studies to back up the claims.  Best to play it safe.  It sounds like you are not suffering too much (I had no GI symptoms and just anemia when I was diagnosed).  Ask your PCP to run the full panel, including  the DGP and EMA tests.  Why?  Not all celiacs test positive to the TTG, like me!  If your Kaiser doc refuses, please ask if you can be referred to a GI and select one who handles celiac patients.  Some celiacs are even seronegative!  In that case, going to an endoscopy is necessary.  Keep in mind that you might just be developing it or know that if everything negative now, you can still develop it in the future.  First-degree relatives should get tested every few years even if there are no symptoms.   What if your PCP refuses even after you show him the printed data supporting your claims (and the ones I made...so hit Dr. Google)? Get to another PCP or put your request in writing  via the patient portal or a registered letter.  Be nice.  Support your claims.  Ask for the full panel or to be referred to a GI.  In writing, they have to respond.   I do know that the TTG catches most celiacs, but not all.  If celiac disease is still suspected, you should move to the next series of celiac tests.  Unfortunately, to keep costs down, Kaiser just orders the TTG for initial screening.  You have to get around that.  I found that out when family  went in for testing and they had Kaiser.   Advocate for your health!  Document!  Save and print all test results and maintain file.   Take care!  
    • hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.  So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.   this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?
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